This N.J. girl is outgrowing her kidneys and the transplant clock is ticking

One of the joys of parenthood is seeing your child continually grow and mature. But for James Sorenson, the growth of his 7-year-old daughter, Jayla, is a mixed blessing.

Jayla has a disorder known as kidney dysplasia and cystic disease, which has interfered with the development of her kidneys since before she was born, limiting their ability to filter and clean her blood normally. As a result, she has steadily outpaced her kidneys’ functional capacity as the rest of her has grown from a 2-pound, 2-ounce infant born two months premature, to a vivacious little girl of normal height and weight who likes to dance, play outside, hug and kiss her dad, and master addition and subtraction in first grade.

“You have to learn different math facts and stuff,” said Jayla, who knows that multiplication lies ahead. “I don’t do, like, times.”

James Sorenson is a single father raising his 7-year-old daughter, Jayla. Jayla's kidneys have not developed at the same rate as the rest of her body.Michael Mancuso | NJ Advance Media for NJ.com

So while James Sorenson delights in his daughter’s progress and her affection, the 29-year-old single father is also mindful of a clock that is ticking toward a more critical stage in Jayla’s condition that will eventually involve a pediatric kidney transplant, and possibly the complications that could accompany one. Before then, Jayla will go on a waiting list for a transplant.

“She’s at 50% kidney function right now, which is pretty stable,” Sorenson told NJ Advance Media during a recent interview at the garden apartment he and Jayla share in Toms River. “But when she gets to 25%, that’s when we’re going to need to start talking about going on the list, the process of going on the list. Probably also seeing if I’m capable of giving one because I know we’re both (type) O. But it’s more than just blood type, so we’d have to do more of that.”

“At 15% you either need the dialysis or the transplant itself” he added. “And basically, from there, it’s basically a waiting game how she grows. If she has a growth spurt, her kidney function can drop.”

About 4,000 children and adults in New Jersey are waiting for an organ transplant, the most common being for a kidney, said Joseph Roth, CEO of the New Jersey Organ and Tissue Sharing Network, a non-profit organization that helps match compatible donors, both living and deceased, with recipients.

There were 678 organ transplants in New Jersey in 2018, including 141 involving living donors, Roth said.

That means about one-sixth of the people waiting for an organ got one, Roth said, while most had to continue relying on dialysis or other treatments to survive. Nationally, about 7 percent of would-be recipients die waiting, Roth said.

“The sickest people have the first crack at an organ they can be compatible with,” Roth said, adding that blood type is one of six characteristics that should match for organ donors and recipients, though fewer matches can work.

Although she was born two month premature, weighing just over 2 lbs, Jayla Sorenson has grown into a vivacious young girl, as seen her at home with her father, James Sorenson, in their Toms River apartment.Michael Mancuso | NJ Advance Media for NJ.com

Children do not make living donations, Roth noted. And therefore because another child’s kidney is typically best suited for a child who needs one, a bittersweet fact of lifesaving pediatric transplants is that they are typically the result of a donor-child’s death.

“It’s always a tragedy when a child dies,” Roth said. “But the parents get a measure of closure knowing that, in their case, some good comes of it.”

The thought has occurred to Jayla’s father.

“Obviously, you’re not wishing anybody any harm on anybody else. It’s also like that child is going to give some other child the gift of life to somebody else,” said Sorenson. “The parent of that child put that child on that list to become a donor because they wanted to help other people.”

That’s exactly what it was like for the parents of Luke Bautista, who was a 15-year-old freshman at Wall High School when he died in 2016 as a result of severe head trauma from an accident at home. Because his older brother, CJ, knew CPR, Luke stayed alive long enough for both kidneys, his heart, a lung, his pancreas and various tissue to be donated to a total of 80 recipients, including one man who recently had a child of his own, said Luke and CJ’s father, Chris Bautista.

“It’s something beautiful that came out of tragedy,” said Bautista. “I’d be lying to you if I told you it was easy to get out of bed every morning, because it’s not. But it definitely helps us get up and jump start our day.”

The Sorensons and Bautistas know each other through the Sharing Network.

“It was really great to see him get involved,” Bautista said of Jayla’s dad. “And she’s really adorable. She’s just so fun to be around.”

Last month, the Sorensons, Bautistas and close to 5,000 other members of the region’s tissue and organ sharing community took part in the Sharing Network 5K in Long Branch, where participants ran and walked the 3.1 miles to raise awareness and money for the network. In addition to helping match donors to recipients, the New Providence-based Sharing Network also provides financial and other assistance to recipient families, related to their care and to their overall financial situation, which often suffers with the debilitating illness that demands the transplant.

Roth said the number of participants and their 40-plus teams in this year’s Long Branch event just about doubled last year’s totals, and pledges appeared well on their way to meeting the fundraising goal of $1.25 million. A similar 5K was also held in New Providence last Sunday.

In addition to the Bautistas’ Team Luke, teams also include Jayla’s Journey, which Sorenson debuted with five people in 2018 then boosted to 45 this year, including friends, family, and a half-dozen members of the track team at Toms River High School South, where he’s the distance running coach. Not surprisingly, Jayla’s Journey dominated the 5K, Sorenson said, with its track team ringers finishing in the top six positions, helping the team raise about $5,000.

Jayla took part, too.

“I did the walk,” she said, dressed like her dad in their pink team T-shirts. “And Daddy did the run — for me!”

As healthy and energetic as she is, Jayla's kidney disorder means she will eventually need a transplant.
Michael Mancuso | NJ Advance Media for NJ.com

This year’s team also included Jayla’s first grade teacher from Tom’s River Citta Elementary School, Kathryn Quackarini, as well as Sorenson’s girlfriend, Theresa Soden.

“To think this is only the beginning of the journey,” said Soden, 27, of Little Egg Harbor, a patient care associate at Community Medical Center in Toms River, who called Jayla and James’ relationship, “absolutely beautiful.”

“He’s an amazing father and she’s an amazing girl. I very much consider myself blessed,” said Soden, who met James through his mother at St. Luke’s Church in Lakehurst. “We do everything we can together — going out to eat, going to the beach, going to the movies. I’m definitely looking forward to spending forever together with the two them.”

Sorenson’s coaching job, which he landed after taking up running to get back in shape following a knee injury playing basketball, is in addition to his work as a substitute teacher in Manchester, where he went to high school. This summer, he plans to work in a Manchester program for people with autism.

He is also in school himself, doing his remaining field work to finish his education degree at Kean University, which he hopes will net him a full-time job teaching physical education while he continues to coach.

Sorenson also tries to make time for his relationship with Soden. And, of course, he has the duties of any single parent: cooking, cleaning, doing the laundry, bathing, dressing, playing with, tutoring and tucking Jayla, who also has a digestive disorder that requires smaller but more frequent meals.

Sorenson, who has had custody of his daughter since shortly after she was born, said he “embraces” the challenges confronting him and his daughter, after getting used to overcoming obstacles from a young age.

He learned he was adopted through through a classmate, whose parents were friends of Sorenson’s mom and dad, and let the information slip out. And he had a childhood medical condition of his own, cysticercosis, which required surgery to remove cysts from his brain and left a large scar stretching nearly ear to ear above his forehead that kids at school mocked mercilessly.

Part of his own determination to become teacher himself, he said, was the painful memory of one of his high school teachers telling his mother that “college was not for him.” And, of course, he has Jayla to motivate him.

“How am I going to show her that I’m ready to give up, when she’s going to be in a circumstance where she can’t give up?” he said.

“Obviously, you don’t want anything to happen to your child,” Sorenson added, his daughter sitting in his lap, the two wearing matching Jayla’s Journey T-shirts. “You’d rather have it happen to you than your child. But at the end of the day, I want her to be able to grow up, to enjoy everything that she, that every child, is supposed to enjoy. That’s why I’ve put myself in a position where I can finally, after next semester, get myself a teaching job and do that as a single parent. Being able to work full time, being in school full time, and being a parent full-time, I’ve done it all for this little girl right here.”

Jayla and her father, James Sorenson, wear matching T-shirts from the Jayla's Journey team he organized last year for events including an annual 5K walk and run sponsored by the non-profit New Jersey Organ and Tissue Sharing Network, which matches donors and recipients.Michael Mancuso | NJ Advance Media for NJ.com